Monday, April 27, 2009

I've read your article about the so-called "autism culture movement," something I am not involved in. In this article my actions are falsely characterized then commented on. At no point was I contacted or interviewed.

Apart from placing me in a movement I don't belong to, and falsely characterizing me as a "crusader," you misrepresent both the nature of Auton and my role in it. In Auton at the Supreme Court of Canada, I opposed both sides, and both sides opposed my intervention.

My position in Auton was about autistic people in Canada who, like me, have not received ABA-based interventions starting very early in life (for many reasons, including that we are too old). This would be most autistic people in Canada. Both sides in Auton, as well as the lower court decisions, dehumanized and wrote off this majority of autistics as doomed, as undeserving of consideration as human beings with human rights, and as belonging not in families or society but in institutions.

My stated role in Auton at the SCC was as one autistic person. Through the lower courts and up to the Supreme Court of Canada, both sides in Auton, as well as the lower court judges, agreed that not one autistic person should have a say in the proceedings--proceedings which engaged Canada's highest law, our Charter of Rights and Freedoms.

Starting before the Auton SCC hearing in 2004, I made my position in Auton fully public, posting online all relevant documents. My intervention was based on the lower court decisions, the 5,000-page evidentiary record, and the applications, responses, replies, and/or written and oral arguments of the parties and other interveners. That is, I was responding to the case as it existed as a Charter case (engaging Canada's highest law, our Charter of Rights and Freedoms), not to some generic demand for ABA services. As with interventions by others in many other cases, the purpose of my intervention was to provide the Court with information it did not already have.

The SCC decision was not based on my intervention but on the failure of the Auton parents to make their case. The premise of the Auton parents was that all "medically necessary" services in Canada are publicly funded for everyone, but this premise is false. Because of this and other major errors on their part, the Auton parents lost. My intervention is mentioned in the SCC decision (though not very accurately), so it was likely influential in some way, possibly in alerting the Court that the two sides in this case--which entirely agreed with each other in excluding, dehumanizing and writing off autistics--were not the whole story.

In your article it is falsely and uncritically assumed that US and Canadian laws and ABA-related legal issues are the same. This is not the case. The way laws have been used in ABA litigation differs by country and has changed across time, with numerous contradictory claims being made (one example here). In Canada, ABA litigation has engaged virtually all of Canada's major human rights laws. The legal status of autistics in Canada has been determined almost entirely through ABA litigation and autistics daily live the consequences.

While I have learned a lot since 2004, the basis of my position in Auton is still the position I take now. Here it is:

1. Autistics are human beings with human rights.

2. Autistics deserve to benefit from and be protected by recognized standards of science and ethics, including professional ethics. These are the standards that automatically protect and benefit nonautistics, and without which they could not proceed safely in society, much less have good outcomes.

3. Services for autistics, whatever those services may be, should be asked for accurately (with respect to the existing scientific literature), ethically, and respectfully.

That's all. In Canada, those demanding ABA services have been unable or unwilling to do so accurately, ethically and respectfully. They could have chosen otherwise. For example, they could have chosen to take the position that autistics deserve recognized standards of science and ethics. If they had, Canada would be a much different--better and safer--place for autistics.

My experience in human rights cases arises not from anything remotely related to the "autism culture movement" or any "crusade" as you falsely claim, but from my error in disclosing my diagnosis to my employer. This not only destroyed my (long, exemplary--according to my employer) blue collar career, it put me in danger. It took almost ten years and a lot of legal work to mitigate some of the damage.

This was not "crusading," as you misrepresent it, much less anything related to any supposed "autism culture movement." The numerous actions taken by my employer in response to knowing I was autistic were so extreme (though they are typical of how autistics--the majority of us who have not undergone ABA programs starting early in life--are regarded and treated in Canada), I did not have much choice.

I've gone on to take the risk of testing my ideas about autism via peer-review, and to show what an uneducated autistic (who has the behaviours and lacks the basic skills routinely invoked to scare people about autism) can contribute to autism research, given the opportunity. My publication record is nothing special, but it is not too bad for someone who has never attended university as a student, who has truly spectacular day-to-day difficulties, and who has been written off numerous times.

I disagree with many of the statements made about ABA-based autism interventions in your article--on both supposed "sides." I have criticized as inadequate, inaccurate and harmful many of the popular criticisms of ABA-based autism interventions. I disagree with ASAN's overall position about ABA, which in many areas is poorly informed and ignores the major underlying issue of quality of intervention research. At the same time, ABA as an approach to autism has been defended by its promoters as though it were an ideology, as sacrosanct and above scrutiny and criticism. ABA is supposed to be a field of science. The poverty of how ABA-based interventions have been both criticized and defended demonstrates the poor standards of science and ethics that are routinely promoted as what autistics deserve.

If you asked, I would tell you that "cultural phenomenon" views of autism have been harmful to autistics, detracting from crucial issues of basic human rights and standards. You won't find "neurotypical" much less "curebie" in my writing, and I sometimes disagree with ASAN's public positions and recommendations (for example, with respect to ABA-based autism interventions and autism research priorities). I have never claimed to represent other autistics, unless individual autistics have specifically given me this privilege.

At the very basic level where I function, representation is beside the point. The issues that matter involve attempts, by those promoting ABA-based interventions and others similar, to remove the basic human rights of autistics (for example, those of us who have not undergone ABA programs starting early in life), and to deny us recognized standards of science and ethics. Anyone is free to deny their own basic human rights, and to deny themselves the basic standards that exist to protect and benefit everyone. But denying basic human rights and basic standards to others is another story.

I wrote virtually nothing about "neurodiversity" until those unfamiliar with my work persistently associated me with it. In response I defined neurodiversity as part of the general idea that disabled people should have human rights--mainstream and noncontroversial except when the disabled people are autistic. I suspect people on both supposed "sides" disagree with this definition, but I don't have a "side," much less a "crusade" and do not have what it takes to be part of any "movement" much less a cultural one.

The standards currently applied to autistics are such that you are free to misrepresent me, and major legal decisions and issues, and so on, all you want. There's nothing I can do except put accurate information on the record, again, even though it has been here all along, for anyone who takes autism seriously.

22 comments:

Thank you. I appreciate knowing your position in the Autism "camps" (for lack of a better phrase). Because I have put you in my "activist, autism is a culture" section when I think about "autism-land" as I call the internet and the Hub. My appologies.

Last week I sent out a 27pg rebuttal to Bill C-360 - funding ABA for all - to the 4 party leaders, the author of the bill, the Minister of Health (per my MP's request) and my MP. It is not a rant, it is not a lobby paper (except if you fund someone's therapy choice you fund mine too - private speech and language). It was an overview of the camps, an overview of the services available, an overview of the school system as I understood it. And it's full of "this is what I understand... here's some links to check out." Because I feel that people need to make their own decisions and do their own research.

In it is the full story of our unfortunate (being polite) dealings with ABA therapy via one of the children's hospitals in Ont.

I fell off my pedestal and am still writing... what I plan to do with it.... ask me in about a year.

I do not believe autism is a culture. It is a disability. No, I'm not trying to reprogram any brains, or make someone "normal". But everyone is entitled to be able to make their own choices for themselves and you need to learn to communicate that choice - not fussy on the method or technology - which means some form of "therapy". I believe children should "live, laugh and play" (Mercedes Lackey - one of the Valdemar anthology books). I believe ALL are entitled to an education, services and protection under the Laws of this Country.

I have discovered over the last month that the "culture" wing - as noted in that Salon article and the "Change.org" mention of it today - those that claim autism is a culture are doing "therapy".... they just don't call it that.

But I can tell that you've had some run-ins with people who have offended you and hurt you deeply.

I can also tell you that I think the main problem is the goal of therapy. If the goal is to "normalize" - that is, make the autistic person become (or at least appear to be) non-autistic - then that is perhaps a questionable reason to pursue that therapy. If, however, the goal is to give the autistic individual skills - that is, teach coping mechanisms, ameliorate many of the physical ailments that get overlooked because of the autism diagnosis, teach a functional method of communication - without trying to remove the autism from the person (which is impossible), then that is a commendable reason to pursue that therapy.

I agree that people need to make their own decisions and do their own research. The problem is that many people are snowballed with the errant assumption (prevalent in society today) that autism is akin to a death-sentence, that ABA is the only way to "fix" it, and that if they don't take action immediately, their child will vegetate in an institution because he or she will never learn anything.

And so we end up with people speaking out against such vitriol, and they end up either taking or being construed as taking the exact opposite stance, which is usually untrue.

I'm merely a former professional in the field, so you may feel free to accept or ignore my thoughts, as you see fit. :)

Actually, The HUB, TAAP, LB/RB, Aspies for Freedom, Change.org, and the blogger from Ireland that's never read "The Horse Boy" book but bashed it... have offended me more than the professionals we've dealt with, Autism Speaks, Jenny McCarthy, and Harold Doherty have. I know their agenda's... they never waver. I don't have to like it, but I do respect that.

Why does the Hub et al. annoy me?? Because their agenda's seem to change daily. That by calling autism a difference instead of the disability it is gov'ts have an excuse to cut the little funding/services there is. That all they do is bash the other side instead of taking the "high road" and teaching others where they've been, what they've done, and how to get from A to B.

That because I says it's cruel that my youngest son has to cry and scream "R Camp" when his bro goes to camp yet they say I should celebrate the fact he can't go.... because it's a difference.... Is cruel. Cruel, mean and nasty to refuse to help a child grow to be the best, the most independant, the person he can learn to be. Because autism cannot be cured. Correct, but the symptoms will lesson, socialization will increase, independance will come, with education and learning. Also, he will be able to decide for himself what supports he requires or desires and can articulate that choice instead of being dependant on others that claim to speak for him.

It's like dealing with the deaf culture and how they tried to get the implants banned.

I have never tried to change the autism. I have redone the Gr 3 Math curriculum with my eldest son in the Classical method b/c the Whole Language method is inappropriate for a child with ASD to learn. So now, in Gr 4 Math is easy, and in Whole Language. Therapy?? Or good parenting?? The child has gone from Non-verbal Mild PDD Apr 2002 to "normal-ish" (suspect we're offically at mild NLD but I refused Sept 08 for a retest - currently "a mild form of ASD" - b/c I still require the OT to finish putting in the permanent computer... will retest at Gr 8)

I had a "go round" with the PDD teacher (my youngest is integrated she goes school to school) over his IEP b/c the social box read for Term 2 this year.. "Child will make eye contact". I got that changed since the child make eye contact when he's comfortable with you, if he's not.... deal with it.

I've worked hard to change the vitrol. The snowballing. Having been there, done that. But, I'm still going to lobby for appropriate funding for appropriate services/therapy (like speech and langauge that I can't afford) for me and mine.

My goal is to pack little boy up his backpack and his sleeping bag, and send him to camp. No eye contact, flapping and all the quirks. But he has to stop bolting, become 100% toilet trained, be able to understand danger and to listen and do as he's told to protect him and the others. So, we'll keep pedalling language and hope one day he understands "why" and can go to camp on his own. If this goal makes me a "curebie" and anti-culture, so be it.

I think I understand where you are coming from now, and I have to say that I agree 100% with the approach you are taking with your children.

I also think that funding should be available for therapies (plural; no one therapy should be mandated, and especially not ABA) for autistic children - and adults! I take it a step further, saying that availability of services to adults with an autism diagnosis should not be dependent upon IQ, as someone with a high (e.g., normal or gifted) testable IQ could conceivably still have a lot of barriers to living independently (i.e., without any sort of assistance or services).

I hope your son gets to go to camp someday soon, because it is something he really wants to do. And I hope he is able to look after his basic needs (e.g., toileting) and I really hope he learns to be safe (e.g., stops bolting).

"Why does the Hub et al. annoy me?? Because their agenda's seem to change daily. That by calling autism a difference instead of the disability it is gov'ts have an excuse to cut the little funding/services there is."http://autisticbfh.blogspot.com/2007/11/unfashionable-abilities.html"Every now and again, someone misrepresents the neurodiversity movement by claiming that its adherents believe autism is not a disability...."

In fact I have a file of posts & comments refuting this strawman that Hub members and/or neurodiversity supporters don't believe autism is a disability but due to a power outage earlier today I can't put my hands on it right now.

I'm interested in knowing how you've labeled me and my position, "camp", philosophy etc. I'd like you to be accurate.

Further to jypsy's comment, I'll pick out just one other example from all of the above:

"the blogger from Ireland that's never read "The Horse Boy" book but bashed it..."

"The blogger from Ireland" (her name is Sharon) has explained the basis for her writing on this subject. Autistics (including Sharon's son) live the consequences of autism-related media stories, excerpts published in the media, radio interviews, etc.; it is totally fair to comment on them all.

I suggest that those making claims about others do the same: be honest about what you have or haven't read, and provide sources so anyone who wants to bother can verify whether what you write is accurate.

From http://autisticbfh.blogspot.com/2007/11/unfashionable-abilities.html :"Every now and again, someone misrepresents the neurodiversity movement by claiming that its adherents believe autism is not a disability, but a wonderful gift and the next stage in human evolution. Without fail, several pro-neurodiversity bloggers respond that they don't believe any such thing­that yes, autism is a disability, but that it is OK to be disabled, and that neurodiversity is all about making the world a more accepting place for the cognitively disabled."(See the comments as well)

From http://autisticbfh.blogspot.com/2007/09/left-hand-of-equality.html:"Most of our potential disabilities (of which there are many)"(See the comments as well - like "If autism is not a disability, I would not be disabled by it, and all of the tasks he performs for me related to autism (waking me up on time because I cannot hear the clock, getting me out of overstimulating situations, refocusing me when I 'tune out' in the middle of doing something, etc) become parlor tricks- and I lose my right to take him in public." )

From http://joyofautism.blogspot.com/2007/03/rebuilding-autism-foundation.html:"In sum - with the negative marketing of autism as a fate worse than cancer, even though autism is a disability not an illness, discussing our children in pejorative terms in public, or for the purposes of obtaining public funding, and with interventions to render the child “indistinguishable” from others – does the end justify the means?"

From http://thiswayoflife.org/blog/?p=136:"Also, before you hurl “neurodiverse” at me as an insult, I’ll remind everyone that I do think autism is a disability - so be cautious before you oversimplify my views!"

I expect despite the repeated corrections, the claims about what autism hub bloggers are supposed to believe will go on.

Numerous examples have been pointed out where the people and organisation listed by Farmwifetwo have changed their position for public relations purposes, without admitting to the changes, so we can't chalk them up to being the result of critical responsiveness. I expect listing them would be equally futile.

I distinctly remember the 'autism is a culture' meme. Wasn't this started by Sabrina Freeman six years ago?

I miss the feel of unity within the autistic community that was at some point associated with the term 'Autistic culture' and 'Autistic pride'. With the prevalent tragic and pitying attitude toward autism, these ideas were provocative, and appealing to autistics who did not find themselves comfortable with many of the societal attitudes toward autism that appeared in the media. However, as the media has offered many more different views of autism, there really hasn't been a dominant view of autism to oppose - and I believe that has made this kind of movement less prevalent if not non-existant today.

There is a tendency,among both nonautistics (i refuse to use the term "neurotypical".),and autistics who do not subscribe to most of what neurodiversity preaches,to lump all those who claim to be neurodiverse,together.

Those who simply believe in human rights for autistics,and that autistics should not be warehoused in old fashioned institutions do not do enough to denounce some of the more extreme, and irrational aspects of neurodiversity. Especially this culture of autism nonsense.

Views such as the one expressed in your November 3,2007 blog entry are either in the minority,or they get drowned out.

You can rail against ABA all you want,but unless you offer some sort of alternative therapy,or push for peer reviewed research of the alternatives that do exist,you come across as advocating that autistics should be left as they are,without any intervention,to improve social skills,verbal communication abilities etc. .Such skills will not turn an autistic into a non autistic.

Promoting alternative methods to ABA,both for adults as well as children,ought to be a top priority for those who claim to speak for those with autism.There are those who promote alternatives to ABA,but there are not enough of them,they are not vocal enough about it,and they do not provide enough evidence that the alternative methods they are promoting would work.

Jannalou said

If, however, the goal is to give the autistic individual skills - that is, teach coping mechanisms, ameliorate many of the physical ailments that get overlooked because of the autism diagnosis, teach a functional method of communication - without trying to remove the autism from the person (which is impossible), then that is a commendable reason to pursue that therapy.Jannalou,if I could reach through the computer,and give you a great big hug,I would.This is one of the first times I have ever heard someone who is not an antivaxer say this.

I have a diagnosis of atypical autism.This means,I have autism that is more severe than HFA,but is not as severe as classic Kanner autism.I have a history of everything you would expect to go with this. Developmental delay,learning disabilities,head banging,elopement,the whole nine yards stuff that so many who advocate neurodiversity,like ASAN,want to gloss over,or ignore as a part of autism.

Yet I also have a lifelong history of bowel disease, heart disease,lung disease,stroke like episodes, chronic infections,and idiopathic arthritis,which I now know is due to a cytopathy.It took me decades to find a cause for my illnesses,which I now know to be mitochondrial in nature.My preexising diagnosis of autism made it very difficult for doctors to take my medical problems seriously.I have a diagnosis of autism I was told,why couldn't I be content with that.It took me years to find a doctor willing to take the the two years that was required to have a workup that ruled out everything but mitochondrial disease,which it looks like I do have.

I have lived with a cycle of regression and recovery my entire life.Regression brought upon by severe illness that most neurodiverse will not admit exists alongside autism.

Harold Dogherty is vilified by many in the neurodiversity movement,but he has a simple point,and one I agree with.His point is,many in the neurodiversity movement misrepresent the nature of autism,by ignoring the more seriously disabled, and implying most autistics are able to do things like hold a job,or get a degree.

Many who espouse neurodiversity want to marginalize,and push aside those with autism caused by Rett Syndrome,fragile X,or mitochondrial disease,as it is not "their" kind of autism.

I agree that the concept of high and low functioning is outmoded,and needs to be scrapped. Scrapped, and replaced with a severity scale,which factors in medical problems,intellectual ,developmental,and learning disabilities into the diagnosis of autism. Perhaps a scoring of points, whereby those with simple,nonregressive Asperger's/HFA get the lowest score on the scale,just above normal,and more points are added for every additional condition.

I don't agree with you that Harold Doherty has a simple point, and I don't agree that his point is that which you say it is. Mr Doherty's goal is to have ABA mandated for all autistic individuals - I can't support that. I do, however, think that there is much more agreement between all "sides" in this argument than people are able to recognize, for whatever reason. Mr Doherty may find that he shares a number of opinions with those of the "neurodiverse" persuasion, if they could only all find a way to talk about things without calling one another names.

I thought of a system, years ago, wherein individuals with special needs (of all types) would be assessed in several different areas and given scores to indicate the severity of their difficulties in each area. While they would be given a label (e.g., autism, cerebral palsy, Down Syndrome), when it came to treatment, they would have all treatment and program recommendations made based on the assessment scores rather than the label. This would avoid the blanket statements about curing autism and focus, instead, on teaching skills and improving functioning in problem areas. It would also guarantee services to anyone who required them, regardless of IQ, as an individual with a high testable IQ who nonetheless required support to make meals and eat regularly would qualify for that support based on the assessment scores.

That's a pie-in-the-sky dream, I suppose, but I think it would probably work fairly well.

farmwifetwo- I've noticed that a lot of the debates on the Hub get started in the first place because a lot of people don't carefully read the things that they're reacting to, or rely on what other people say about what those things say. A lot of people seem to notice certain words, like "neurodiversity" or "vaccines" or whatever, and a little bit of the context surrounding one or two uses of those words, and automatically assume that the person using them has some certain pre-packaged ideology. Which in some cases means mistaking what the person is saying for some real ideology that the person doesn't actually agree with, just because they used a few of the same words, and in others it seems to mean assuming the person has some extreme viewpoint or ideology that almost no one actually has. Like that there is some big contingent of people saying they are in favor of "neurodiversity" who insist that autism is not a disability and that this means no autistics should ever get help or services.

I don't know any autistic person who actually believes this. Michelle Dawson certainly doesn't. The header on her blog next to all of her posts, reads "Neurodiversity is part of the general idea that disabled people should have human rights. Neurodiversity is mainstream and noncontroversial except when the disabled people are autistic." To me, that's pretty hard to miss. The only way I can see someone taking the message from her blog that some people have apparently taken, is if they somehow managed to read *just* the word neurodiversity and nothing else and made a lot of assumptions from there, or saw that there was a paragraph that contained the words "neurodiversity," "disabled" and "autistic," and filled it in in their own mind to say something like "neurodiversity means that autistic people are not disabled." Which is not remotely like anything Michelle has ever said anywhere, or any other autistic person I know of, either.

You say that you read the Hub, but I don't know how many blogs you read or how closely you read them. If you read other blogs by autistic people, you seem to be doing so by doing the same, skimming for keywords and filling in the rest by yourself thing. Because if you did read all of them closely, you would definitely have noticed that

1. many autistic bloggers and commentors identify themselves as being disabled. (I don't have a blog, but I comment on some Hub blogs, and I definitely identify as disabled.)

2. Many Autism Hub bloggers who are themselves autistic, including Joel Smith, Amanda Baggs, Larry Arnold, abfh and Dora Raymaker, write frequently from the point of view that autistics are part of the broader disability community, and about issues of interest to non-autistic disabled people. Many of them have cited examples of things they need, or need but do not have, assistance with, which are by no means trivial. (I'm trying to keep citing examples of specific posts to a minimum since a bunch of people have already done that, it's taken me most of today to write this and not all the replies were there when I started it.)

3. Self-advocates who understand disability through a social model, would boggle at the assertion that autism (or any other disability) cannot be a culture because it is a disability, and by extension, that there is no such thing as a disability culture in general or cultures formed by people with specific disabilities. And that saying disabled people have their own cultures somehow means saying that disabilities don't cause problems for the people who have them and that no one needs help, that these things are somehow mutually exclusive.

Yes, there are people in the autistic community who use the word neurodiversity who insist that autism isn't a disability and apparently get offended at the suggestion that they themselves are disabled, because they see it as meaning "broken and inferior" or something. Some autistic bloggers have publically called them out on this assumption (for instance, see this post, Welcome to the Disability Community, which was written directly in response to that kind of attitude). The fact that they use certain words to describe themselves, doesn't make them any more representative of some monolithic "neurodiversity viewpoint" or "autistic activist viewpoint" any more than Joel or Michelle are. Disability communities, like all communities of human beings in general, have different factions and different points of view and frequently heated debates within them.

In response to Roger Kulp, autism advocates, including behaviour analysts, have been successful in demanding low/no standards of science and ethics for autistics (e.g., see the Wynberg and Auton trial decisions).

Autism advocates have successfully argued that autistics do not deserve good experimental design (e.g., Freeman, 2003).

Again I suggest to Mr Kulp that he provide sources for the many statements he makes about other people. In fact I (again) suggest that generally.

In response to Riel, my formal (Mottron et al., 2008) and informal writing (one example) includes criticisms of the false assumption that abandoning the supposed "medical model" for the supposed "social model" improves the situation for autistics.

In my view these "models" are of very limited use (if any). The "social model" of disability is embraced by behaviour analysts, who see autism as a social construction (e.g., Lovaas, 2003).

Also, in general response to much of the above, not everyone can thinks and act politically. Not everyone uses political methods, or has political values, standards and goals. Not everyone is an activist. And so on. There are non-political approaches to autism.

"A lot of people seem to notice certain words, like 'neurodiversity' or 'vaccines' or whatever, and a little bit of the context surrounding one or two uses of those words, and automatically assume that the person using them has some certain pre-packaged ideology."

Thank you for clarifying this. Having not found your blog until recently, I'd not have known this background. I've written a critique of Svoboda's article, and included a link to your entry here.

I do not believe autism is a culture. It is a disability.FWIW, IMHO, autism isn't a culture, but people affected by autism can come together creating a culture. Sort of like deafness isn't a culture, but some deaf people have formed a Deaf identity and culture.

My goal is to pack little boy up his backpack and his sleeping bag, and send him to camp. No eye contact, flapping and all the quirks. But he has to stop bolting, become 100% toilet trained, be able to understand danger and to listen and do as he's told to protect him and the others. So, we'll keep pedalling language and hope one day he understands "why" and can go to camp on his own. If this goal makes me a "curebie" and anti-culture, so be it.Farmwifetwo, for the record, I really don't think that goal does make you a "curebie" or anti-culture. It sounds similar to the goals we have - to advance people's independent living skills while affording us environments where the differences associated with our neurology (which we don't dispute is a disability - in fact, we successfully advocated for legislation - the ADA Amendments Act - to reaffirm that it would be considered as such for court cases) are accepted and supported.

I think a lot of the arguments made against neurodiversity and Autistic self-advocacy groups are straw man ones over issues of terminology or misunderstandings.